Discussions By Condition: Gastrointestinal conditions

Celiac Questions???

I went to my doctor thinking I had IBS. I'm a 46-year-old woman, relatively healthy, but for years have suffered with gas, bloating, and diarrhea. I finally had had enough and decided to see what I could do for it. Since IBS is a diagnosis of elimination, they took blood to check my thyroid and for celiac disease. Imagine my surprise when my blood test for celiac came back positive. I have an appointment with an gastro.... doctor on April 1st.

Here are my questions...

1) How accurate is the blood test? I know the specialist will most likely order an endoscopy to take some biopsies, but what how accurate is the blood tst?

2) I've done some research in the last few days, but am wondering if celiac is a disease of degrees. In other words - does everyone diagnosed need to go totally gluten-free or can you avoid wheat and gluten products most of the time, but "cheat" on occasion.

I made shrimp fettacine tonight just to see what happened. Sure enough... after a nice large helping I was hit with diarrhea and spent a good amount of time in the bathroom. My 11-year-old daughter became sick to her stomach afterwards. (It wasn't the shrimp - everyone else is fine.) But... ever since she was born she's had stomach troubles - especially after eating. Often, when she was little her brother would say, "Oh, Katie just puked again." We didn't ever become concerned after a point, because generally she would be better soon and never did appear "sick". That brings me to question #3...

7 Replies:

Hi, 1) The blood tests are considered very accurate. 2) If you have Celiac disease, you must avoid all sources of gluten, and not "cheat". If you are getting an endoscopy, you must continue to consume gluten until the test is performed. You should have your daughter tested. It's a genetic disorder, and if you have Celiac, your siblings should be tested - as well as any other children you have. The good news about a Celiac diagnosis is that you can be in control of your problem. Celiac disease is the only autoimmune disease that has an effective treatment - which is adherence to a gluten-free diet for life. It's very difficult at first, but gets easier. There are more gluten free products, restaurants, and other resources such as cookbooks and guides, than ever before. Many people with Celiac also go dairy free as well, at least until their digestive system heals. Casein intolerance is vary common for people with Celiac. I would recommend the book, CELIAC DISEASE - A HIDDEN EPIDEMIC, by Dr. Peter H.R. Green, director of the Celiac Disease Center at Columbia University in New York City. There is much useful information in it.

I neglected to mention one thing, and would like to clarify it: A positive blood test for Celiac is considered very reliable, but a negative one does not necessarily mean that you do not have it. The same can also be said of the endoscope exam. Many people who have tested negative on either, or both, have experienced an improvement to their health by going on a gluten free diet. Here is a very comprehensive explanation of the blood tests:http://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.htmlIn clinical trials, the IgA antibodies have a specificity of 97% but the sensitivity is only 71%. That means that, if a patient is IgA positive, there is a 97% probability that they have celiac disease. Conversely, if the patient is IgA negative, there is only a 71% probability that the patient is truly negative for celiac disease. Therefore, a positive result is a strong indication that the patient has the disease but a negative result does not necessarily mean that they don not have it.

Do any of you Celiacs have a problem with not being able to TOUCH wheat? I can't come in contact with wheat on my skin or can't touch something that someone touched after they handled wheat. This is really becoming a problem. Any ideas out there?

Definitely have your daughter tested. And as far as i've heard you shouldn't cheat, and according to my cousin who has celiac you don't really need to, because there is a lot more she can eat then she originally realized. She always has food in her car to eat because she can't eat fast food but she has no trouble finding food to make herself.

I neglected to mention one thing, and would like to clarify it: A positive blood test for Celiac is considered very reliable, but a negative one does not necessarily mean that you do not have it. The same can also be said of the endoscope exam. Many people who have tested negative on either, or both, have experienced an improvement to their health by going on a gluten free diet. Here is a very comprehensive explanation of the blood tests:http://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.htmlI was diagnosed with fibromyalgia, along with a diagnosis of vitiligo, by my Dr. about 1 1/2 to 2 yrs ago but there was so many other things going on with me that arn't included in fibromyalgia- the constant nausea, rashes, joint pain... also i had a some blood work done and my results came back normal except for low potassium, and a positive ANA. i haven't been able to find if celiac's would come back a positive ANA. does anyone know? In the last 3 months i have cut out dairy and gluten from my diet and i have been feeling my age again...23 not 83... it is amazing to have energy again!

I have been reading posts and have found them to be most helpful. I do not know for sure why I feel the need to ask, but I have an unsettled feeling about our newest diagnosis. I would appreciate input.My 15 year old son was dx with Type 1DM on March 12, 2010. We educated and he adjusted extremely well. July he was not on any insulin at all for almost 5 weeks. August 1, he was in an accident (12 staples in head, broken rib, pulmonary contusions) We have went back on insulin three days after accident. Not a problem, just a bit confused.Aug 12, had endoscopy/biopsy(abdominal discomfort and positive labs). We were told the next week to become Gluten free, We now have Celiacs. I have been in the medical field for over 15 years, I get the concept and comprehend the info given. However, I am not a peace with this at all. I know it is overwhelming and will take time, I feel this is not the quite the same feeling. I think there is another issue to be addressed. I don't know, Maybe I am that crazy mom..Thanks for your opinionsMonette

I have been reading posts and have found them to be most helpful. I do not know for sure why I feel the need to ask, but I have an unsettled feeling about our newest diagnosis. I would appreciate input.My 15 year old son was dx with Type 1DM on March 12, 2010. We educated and he adjusted extremely well. July he was not on any insulin at all for almost 5 weeks. August 1, he was in an accident (12 staples in head, broken rib, pulmonary contusions) We have went back on insulin three days after accident. Not a problem, just a bit confused.Aug 12, had endoscopy/biopsy(abdominal discomfort and positive labs). We were told the next week to become Gluten free, We now have Celiacs. I have been in the medical field for over 15 years, I get the concept and comprehend the info given. However, I am not a peace with this at all. I know it is overwhelming and will take time, I feel this is not the quite the same feeling. I think there is another issue to be addressed. I don't know, Maybe I am that crazy mom..Thanks for your opinionsMonette I have a question to answer your question...gluten has been around since the begining of time...why are so many people now allergic to it?there is even airborne gluten...also around since the begining...what gives?!ANSWER-celiac disease is the inabilty to digest gluten...so we cut out gluten...if we cant digest everything....do we cut out everthing?...of course not! GLUTEN IS NOT THE PROBLEM...the body's probiotic levels have fallen too low and it can no longer control body absorbtion...dont be surprised if he becomes lactose intolerant as well!~LISTEN CAREFULLY...RUN..NOT WALK...RUN to a natural food store and get a refridgerated bottle of infant probiotics....administer them 2 hours after any meds or ant-biotic....by the way...the CELIACS WAS CAUSED BY THE HOSPITAL GIVING HIM LARGE DOSES OF ANTI-BIOTICS which cause the disease...I had a co-worker whos child had this problem for 3 months...she went back and forth to the pediatricians...finally I bought her the probiotic fromVITAMIN SHOP..her child was cured in 3 days!!!-good luck and God bless!